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The National Autism Center’s

National Standards Project

Findings and Conclusions

addressing the need for evidence-


based practice guidelines for
autism spectrum disorders
Copyright © 2009 National Autism Center
41 Pacella Park Drive
Randolph, Massachusetts 02368

We have endeavored to build consensus among experts from diverse fields of study and theoretical
orientation. We collaboratively determined the strategies used to evaluate the literature on the
treatment of Autism Spectrum Disorders. In addition, we jointly determined the intended use of
this document. We used a systematic process to provide all of our experts multiple opportunities to
provide feedback on both the process and the document. Given the diversity of perspectives held by
our experts, the information contained in this report does not necessarily reflect the unique views
of each of its contributors on every point. We are pleased with the spirit of collaboration these
experts brought to this process.
in memory of edward g. carr, ph.d., bcba
This report is dedicated to the memory of Dr. Ted Carr, an internationally
recognized leader in the treatment of Autism Spectrum Disorders and in
the field of Positive Behavior Supports.

From the outset, Ted was a major contributor to the National


Standards Project. He played a pivotal role in shaping the methodology
used in the Project. Ted understood that the value of the National
Standards Project was based not only on the scientific validity of its
design and implementation, but also on its social validity within the
broader community. We are grateful to Ted for his insightful input, and
his persistent focus on ensuring that this document be useful to families,
educators, and service providers.

Throughout his career, Ted often led the charge for the intelligent
care and compassionate and respectful treatment of individuals with
Autism Spectrum Disorders and other developmental disabilities. We
at the National Autism Center, along with countless organizations and
professionals throughout the world, will miss him and keenly feel his loss.
vi  } 

Table of Contents

Acknowledgments ix
Contributors x

1 Introduction
About the National Standards Project. . . . . . . . . . . . . . . 1
1

About the National Autism Center. . . . . . . . . . . . . . . . . 2

2 Overview of the National Standards Project 3


What is the Purpose? . . . . . . . . . . . . . . . . . . . . . . 3
What was the Process? . . . . . . . . . . . . . . . . . . . . . 4
Developing a Model . . . . . . . . . . . . . . . . . . . . . 4
Identifying the Research . . . . . . . . . . . . . . . . . . . . 4
Ensuring Reliability . . . . . . . . . . . . . . . . . . . . . . 6
About the Scientific Merit Rating Scale. . . . . . . . . . . . . . 6
Treatment Effects Ratings . . . . . . . . . . . . . . . . . . . 7
Strength of Evidence Classification System . . . . . . . . . . . . 9

3 Outcomes
Established Treatments . . . . . . . . . . . . . . . . . . . . 11
11

Detailed Summary of Established Treatments . . . . . . . . . . . 17


Emerging Treatments . . . . . . . . . . . . . . . . . . . . . 20
Unestablished Treatments. . . . . . . . . . . . . . . . . . . 22
Ineffective/Harmful Treatments . . . . . . . . . . . . . . . . . 24

4 Recommendations for Treatment Selection 25


  {  vii

5
Evidence-based Practice 27

6
Limitations 29

7
Future Directions
Future Directions for the Scientific Community . . . . . . . . . . 33
33

Future Directions with Methodology . . . . . . . . . . . . . . . 34


Future Directions for the National Standards Report. . . . . . . . 36

Appendix 1: Inclusionary and Exclusionary Criteria 37


Appendix 2: Scientific Merit Rating Scale 38
Appendix 3: Treatment Effects 43
Appendix 4: Treatment Target Definitions 44
Appendix 5: Names and Definitions of Emerging and
Unestablished Treatments 45

References 49
Index 51
  {  ix

Acknowledgments
There are many challenges in undertaking a project of this nature. A series of complex decisions must be made over the
course of several years that influence the usefulness of the final document. I would like to take the opportunity to thank
the extraordinary number of professionals, family members, and organizations that have made this task easier.

I have had the good fortune to receive feedback from family members and individuals on the autism spectrum at
the numerous conferences at which I have discussed the National Standards Project. Your input has influenced both
the process we have used and this final document. I hope you continue to provide us feedback as we develop future
editions of the National Standards Project. I have also received feedback at these conferences from professionals
representing different fields of expertise and theoretical orientations. These professionals grapple with the very compli-
cated process of providing best practices in homes, schools, and communities. Thank you for your assistance and your
sustained input to the National Standards Project.

I am also grateful to the professionals and lay members of the autism community who provided very detailed feedback
at various stages of this project. It would be hard to overstate the importance of your contributions. Your disparate
views aided in the development of the review process and the completion of this document. Many of you are identi-
fied in our contributors section. I appreciate the consistent support of our expert panelists and conceptual reviewers
who contributed tirelessly throughout this process. The input of families and professionals was also essential to the
development of this project.

The National Standards Project could not have been completed without an important group of organizations and indi-
viduals. We appreciate both their willingness to underwrite the costs associated with the project and their consistent
neutrality regarding the outcomes reported in this document. May Institute has supported the National Standards
Project from its inception. Most costs associated with the first plenary session which began the development of
this project were provided by the Autism Education Network (AEN). Without the support of Michelle Waterman and
Janet Lishman of AEN, the early development of this project would have been far more challenging. Additional costs
for the project were underwritten by the California Department of Developmental Services. We also appreciate the
support and feedback we received from the Oversight and Advisory Committees through the California Department of
Developmental Services and the professionals involved in the “Autism Spectrum Disorders: Guidelines for Effective
Interventions” document that will be available soon.

Susan M. Wilczynski, Ph.D., BCBA


Executive Director, National Autism Center
Chair, National Standards Project
x  } 

Contributors

Pilot Teams
Team 1
Gina Green, Ph.D., BCBA-D
Joseph N. Ricciardi, Psy.D., ABPP, BCBA

Team 2
Brian A. Boyd, Ph.D
Kara Anne Hume, Ph.D.
Mara V. Ladd, Ph.D.
Samuel L. Odom, Ph.D.
Hanna C. Rue, Ph.D.

Research Assistants Statistical Consultant


Lauren E. Christian, M.A. Tammy Greer, Ph.D.
Jesse Logue, B.A.

Advisors Conceptual Model Reviewers


Document Commentators Carl J. Dunst, Ph.D. Brian A. Boyd, Ph.D.
Jennifer D. Bass, Psy.D. Dean L. Fixsen, Ph.D. Anthony J. Cuvo, Ph.D.
Bridget Cannon-Hale, M.S.W. Gina Green, Ph.D., BCBA-D Ronnie Detrich, Ph.D., BCBA
Nancy DeFilippis, B.A. Catherine E. Lord, Ph.D. Wayne W. Fisher, Ph.D.
Natalie DeNardo, B.A. Dennis C. Russo, Ph.D., ABBP, ABPP Lauren Franke, Psy.D., CCC-SP
Marcia Eichelbeger, B.S. William Frea, Ph.D.
Stefanie Fillers, B.A., BCABA Lynne Gregory, Ph.D.
Mary Elisabeth Hannah, M.S.Ed., BCBA Expert Panelists Kara Anne Hume, Ph.D.
Kerry Hayes, B.A. Susan M. Wilczynski, Ph.D., BCBA (Chair) Penelope K. Knapp, M.D.
Deborah Lacey Jane I. Carlson, Ph.D., BCBA John R. Lutzker, Ph.D.
Kelli Leahy, B.A. Edward G. Carr, Ph.D., BCBA David McIntosh, Ph.D.
Linda Lotspeich, M.D. Marjorie H. Charlop, Ph.D. Gary Mesibov, Ph.D.
Dana Pellitteri, B.A. Glen Dunlap, Ph.D. Patricia A. Prelock, Ph.D., CCC-SLP
Nicole Prindeville, B.A. Gina Green, Ph.D., BCBA-D Sally J. Rogers, Ph.D.
Hanna C. Rue, Ph.D. Alan E. Harchik, Ph.D., BCBA-D Mark D. Shriver, Ph.D.
Annette Wragge, M.Ed. Robert H. Horner, Ph.D. Brenda Smith Myles, Ph.D.
Ronald Huff, Ph.D. Coleen R. Sparkman, M.A., CCC-SLP
We also thank a number of families who Aubyn C. Stahmer, Ph.D., BCBA-D
Lynn Kern Koegel, Ph.D., CCC-SLP
provided input but did not wish to have Pamela J. Wolfberg, Ph.D.
Robert L. Koegel, Ph.D.
their names made public. John G. Youngbauer, Ph.D.
Ethan S. Long, Ph.D., BCBA-D
Stephen C. Luce, Ph.D., BCBA-D
James K. Luiselli, Ed.D., ABPP, BCBA-D
Computer Consultant Samuel L. Odom, Ph.D.
Jeffrey K. Oresik, M.S. Cathy L. Pratt, Ph.D.
Robert F. Putnam, Ph.D., BCBA
Joseph N. Ricciardi, Psy.D., ABPP, BCBA
Editors Raymond G. Romanczyk, Ph.D., BCBA-D
Heidi A. Howard, M.P.A. Ilene S. Schwartz, Ph.D., BCBA
Patricia Ladew, B.S. Tristram H. Smith, Ph.D.
Eileen G. Pollack, M.A. Phillip S. Strain, Ph.D.
Bridget A. Taylor, Psy.D., BCBA
Susan F. Thibadeau, Ph.D., BCBA-D
Graphic Designer Tania M. Treml, M.Ed., BCBA
Juanita Class
  {  xi

Article Reviewers
Amanda N. Adams, Ph.D., BCBA Daniel J. Krenzer, M.S. Jana M. Sarno, M.A.
Amanda K. Albertson, M.A. Mara V. Ladd, Ph.D. Stephanie L. Schmitz, Ed.S.
Keith D. Allen, Ph.D., BCBA Courtney M. LeClair, M.A. Mark D. Shriver, Ph.D.
Angela M. Arnold-Seritepe, Ph.D. Celia Lie, Ph.D. Jennifer M. Silber, Ph.D., BCBA
Judah B. Axe, Ph.D., BCBA Ethan S. Long, Ph.D., BCBA-D Torri Smith Tejral, M.S., BCBA
Jennifer D. Bass, Psy.D. James K. Luiselli, Ed.D., ABPP, BCBA-D Tristram H. Smith, Ph.D.
Barbara Becker-Cottrill, Ed.D. Elizabeth A. Lyons, Ph.D., BCBA Debborah E. Smyth, Ph.D.
Stacy Lynn Bliss Fudge, Ph.D. Gwen Martin, Ph.D., BCBA Aubyn C. Stahmer, Ph.D.
Brian A. Boyd, Ph.D. Britney N. Mauldin, M.S. CarrieAnne St. Armand, M.B.A., M.S., BCBA
James E. Carr, Ph.D., BCBA Judy A. McCarty, Ph.D., NCSP, BCBA Ravit R. Stein, Ph.D.
Stephanie Chopko, M.A. J. Christopher McGinnis, Ph.D., NCSP, BCBA Catherine E. Sumpter, Ph.D.
Costanza Colombi, Ph.D. Christine McGrath, Ph.D., NCSP Bridget A. Taylor, Psy.D., BCBA
Shannon E. Crozier, Ph.D., BCBA Victoria Moore, Psy.D. Susan F. Thibadeau, Ph.D., BCBA-D
Elizabeth Delpizzo-Cheng, Ph.D., BCBA, NCSP Oliver C. Mudford, Ph.D., BCBA Matthew J. Tincani, Ph.D.
Ronnie Detrich, Ph.D., BCBA Dipti Mudgal, Ph.D. Jennifer Wick, M.A.
Melanie D. Dubard, Ph.D., BCBA Samuel L. Odom, Ph.D. Susan M. Wilczynski, Ph.D., BCBA
Stephen E. Eversole, Ed.D., BCBA-D Gary M. Pace, Ph.D., BCBA-D Pamela S. Wolfe, Ph.D.
Adam B. Feinberg, Ph.D., BCBA-D Heather Peters, Ph.D. April S. Worsdell, Ph.D., BCBA
Laura F. Fisher, Psy.D. Marisa Petruccelli, Psy.D.
Wayne W. Fisher, Ph.D. Katrina J. Phillips, Ph.D., BCBA
William Frea, Ph.D. Patricia A. Prelock, Ph.D., CCC-SLP
William A. Galbraith, Ph.D., BCBA Jane E. Prochnow, Ed.D.
Katherine T. Gilligan, M.S., BCBA Robert F. Putnam, Ph.D., BCBA
Gina Green, Ph.D., BCBA-D Sarah G. Reck, B.A.
Tracy D. Guiou, Ph.D., BCABA Henry S. Roane, Ph.D., BCBA
Neelima Gutti, B.S. Lise Roll-Peterson, Ph.D., BCBA
Lisa M. Hagermoser Sanetti, Ph.D. Hannah C. Rue, Ph.D.
Alan E. Harchik, Ph.D., BCBA-D Dennis C. Russo, Ph.D, ABBP, ABPP
Patrick F. Heick, Ph.D., BCBA-D
Thomas S. Higbee, Ph.D., BCBA
Kara Anne Hume, Ph.D.
Maree Hunt, Ph.D.
Melissa D. Hunter, Ph.D.
Heather Jennett, Ph.D., BCBA
Kristen N. Johnson-Gros, Ph.D., NCSP
Debra M. Kamps, Ph.D.
Amanda M. Karsten, M.A.
Shannon Kay, Ph.D., BCBA
Courtney L. Keegan, M.Ed., BCBA
Penelope K. Knapp, M.D.
1 Introduction

About the National Standards Project


The National Standards Project, a primary initiative of the National Autism

Center, addresses the need for evidence-based practice guidelines for

Autism Spectrum Disorders (ASD).

The National Standards Project seeks to:


◖◖ provide the strength of evidence supporting educational and behavioral treatments
that target the core characteristics of these neurological disorders
◖◖ describe the age, diagnosis, and skills/behaviors targeted for improvement associ-
ated with treatment options
◖◖ identify the limitations of the current body of research on autism treatment
◖◖ offer recommendations for engaging in evidence-based practice for ASD

Who will benefit from national standards?


We believe that parents, caregivers, educators, and service providers who must
make complicated decisions about treatment selection will benefit from national stan-
dards.

1  }  Findings and Conclusions


About the National Autism Center
The National Autism Center is dedicated to serving children and adolescents

with Autism Spectrum Disorders (ASD) by providing reliable information, pro-

moting best practices, and offering comprehensive resources for families,

practitioners, and communities.

An advocate for evidence-based treatment approaches, the National Autism Center


identifies effective programming and shares practical information with families about
how to respond to the challenges they face. The Center also conducts applied research
as well as develops training and service models for practitioners. Finally, the Center
works to shape public policy concerning ASD and its treatment through the develop-
ment and dissemination of national standards of practice.

Guided by a Professional Advisory Board, the Center brings concerned constituents


together to help individuals with Autism Spectrum Disorders and their families pursue
a better quality of life.

National Standards Project  {  2


2 Overview of the National
Standards Project
What is the Purpose?
The National Standards Project serves three primary purposes:
1. To identify the level of research support currently available for educational and
behavioral interventions used with individuals (below 22 years of age)1 with Autism
Spectrum Disorders (ASD). These interventions address the core characteristics of
these neurological disorders. Knowing levels of research support is an important
component in selecting treatments that are appropriate for individuals on the autism
spectrum.
2. To help parents, caregivers, educators, and service providers understand how to
integrate critical information in making treatment decisions. Specifically, evidence-
based practice involves the integration of research findings with {a} professional
judgment and data-based clinical decision-making, {b} values and preferences of
families, and {c} assessing and improving the capacity of the system to implement
the intervention with a high degree of accuracy.
3. To identify limitations of the existing treatment research involving individuals with
ASD.
We hope that the National Standards Project will help individuals with ASD, their
families, caregivers, educators, and service providers to select treatments that support
people on the autism spectrum in reaching their full potential.

1
  For the purpose of this report, we use the phrase “individuals with Autism Spectrum Disorders” to refer to individuals on
the autism spectrum who are under 22 years of age.

3  }  Findings and Conclusions


What was the Process?
Developing the Model
The National Standards Project began with the development of a model for evalu-
ating the scientific literature involving the treatment of ASD by a working group
consisting of Pilot Team 1 and outside consultation from methodologists2.The process
for the initial development of the National Standards Project is outlined in Flowchart
1. We developed a model based on an examination of evidence-based practice guide-
lines from other health and psychology fields3 as well as from 25 experts (see expert
panel) attending planning sessions for the National Standards Project. This model was
sent to the original experts as well as an additional 20 experts (see conceptual review-
ers) who represent diverse fields of study and theoretical orientations. The model was
modified based on their feedback and then served as the foundation for data collection
procedures.

Identifying the Research


Prior to data collection, we identified the ASD treatment articles that should be
included in our review. These treatments were generally designed to address the core
features of these neurological disorders. A number of these studies also addressed the
associated features of ASD. The studies were conducted in a wide variety of settings
such as universities, university-based clinics, medical settings, and schools and were
conducted by a broad range of professionals (e.g., psychologists, speech-language

2
  The pilot team relied on the following sources: Sidman (1960); Johnston & Pennypacker (1993); Kazdin (1982; 1998);
New York State Department of Health, Early Intervention Program (1999) and; Task Force on Promotion and Dissemination of
Psychological Procedures (1995).
3
  These systems were developed based on an examination of previous evidence-based practice guidelines including
the Agency for Healthcare Research and Quality (West, King, Carey, Lohr, McKoy et al., 2002), American Psychological
Association Presidential Task Force on Evidence-Based Practice (2003), and the Task Force on Evidence-Based Interventions
in School Psychology (APA, 2005). These were also based on an examination of publications about evidence-based practice
by authors {a} Chambless, Baker, Baucom, Beutler, Calhoun, Crits-Christoph, et al., (1998) and {b} Horner, Carr, Halle, McGee,
Odom, & Wolery (2005).

National Standards Project  {  4


Flowchart 1} Process of the Initial Development of the National Standards Project

Pilot Team 1 develops initial systems


for evaluating the literature

Expert panel convenes planning sessions

Develop initial version of conceptual model

Conceptual reviewers and expert


panelists review conceptual model

Modify conceptual model

Develop coding manual and coding Literature search identifies


Identify article reviewers
form based on conceptual model initial abstracts for consideration

Identify pilot articles Apply inclusionary and


exclusionary criteria

Establish reliability of pilot team Identify additional articles

Establish reliability of article reviewers

Begin article reviews using the Remove articles based on


Scientific Merit Rating Scale exclusionary criteria

Complete article reviews

Treatment categorization

Complete analysis using Strength


of Evidence Classification System

5  }  Findings and Conclusions


pathologists, educators, occupational or physi- About the Scientific
cal therapists). Search engines produced a
total of 6,463 abstracts for consideration; an
Merit Rating Scale
additional 644 abstracts were identified by our We developed the Scientific Merit Rating
experts, attendees to national autism confer- Scale as a means of objectively evaluating
ences, and project participants who reviewed whether the methods used in each study
recent book chapters. These abstracts were were strong enough to determine whether or
compared against our inclusion/exclusion not a treatment was effective for participants
criteria (see Appendix 1). An additional 413 on the autism spectrum. This information
articles were removed by trained field review- allows us to determine if the results are
ers (described below). We included 724 believable enough that we would expect simi-
peer-reviewed articles in our final review. lar results in other studies that used equal or
Because more than one study was published better research methodologies.
in several of these articles, a total of 775
We then applied each of the dimensions
research studies were reviewed and analyzed.
(listed below) included in the Scientific Merit
Rating Scale in the same way to each article.
Ensuring Reliability This allowed us to consistently answer
To ensure a high degree of agreement (i.e., questions relevant to the scientific merit of
reliability) among reviewers, the coding of each study specifically related to individuals
articles began with observer calibration. That with ASD. Table 1 briefly describes some of
is, a pilot team reviewed articles and made the questions answered with the Scientific
modifications to a coding manual until interob- Merit Rating Scale. (A detailed outline of the
server agreement reached an acceptable level Scientific Merit Rating Scale is available in
(>80%). All field reviewers then received a Appendix 2.)
copy of the coding manual, the coding form,
and a pilot article to code. Field reviewers
The five dimensions of the Scientific
who reached an acceptable level of agree- Merit Rating Scale include:
ment (>80%) were invited to review articles 1. experimental rigor of the research design;
for the National Standards Project.
2. quality of the dependent variable;
3. evidence of treatment fidelity;
4. demonstration of participant ascertain-
ment; and
5. generalization data collected.

National Standards Project  {  6


Table 1} Examples of Questions Addressed with
the Scientific Merit Rating Scale

Rating} Scores fall between 0 and 5 with higher


scores representing higher indications of
scientific merit specific to the ASD population

Measurement of
Design:
Dependent Variable: Measurement of Participant Generalization
Two classes of research
Two types of data were Independent Variable Ascertainment of Tx Effect(s)
design were considered
considered
Group Single- Test, scale, Direct
subject checklist, behavioral
etc. observation
Answers Answers Answers Answers
questions questions questions questions Answers questions such Answers ques- Answers ques-
such as: such as: such as: such as: as: tions such as: tions such as:
How many How many Was the What type of Is there evidence the treat- Who delivered the Were objective data
partici- comparisons protocol measurement ment was implemented diagnosis? collected?
pants were were made? standardized? was used? accurately?
Was the diagnosis Were maintenance
included?
How many What are the Is there How much treatment fidelity confirmed? and/or generaliza-
How many data points psychometric evidence of data were collected? tion data collected?
Were psycho-
groups were were properties? reliability?
Is there evidence of reliabil- metrically sound
included? collected?
Were the How much ity for treatment fidelity? instruments used?
Were relevant How many evaluators data were
Were DSM or ICD
data lost? partici- blind and/or collected?
criteria used?
pants were independent?
What was
included?
the research
design? Were relevant
data lost?

Each category was weighted. Dimensions that have been consistently acknowl-
edged as essential in research since the first studies were published were given
stronger weights. Factors that have most recently been considered important were
given lesser weights. The weights assigned were as follows: Research Design (.30) +
Dependent Variable (.25) + Participant Ascertainment (.20) + Procedural Integrity (.15) +
Generalization (.10).

Treatment Effects Ratings


In addition, each study was examined to determine if the treatment effects were:
{a} beneficial, {b} ineffective, {c} adverse, or {d} unknown.
◖◖ Beneficial is identified when there is sufficient evidence that we can be confident
favorable outcomes resulted from the treatment.
◖◖ Unknown was identified when there was not enough information to allow us to
confidently determine the treatment effects.

7  }  Findings and Conclusions


◖◖ Ineffective is identified when there is suf- available for each educational and behavioral
ficient evidence that we can be confident intervention we examined. We identified
favorable outcomes did not result from the 38 treatments4. The term “treatment” may
treatment. represent either intervention strategies (i.e.,
◖◖ Adverse is identified when there is suf- therapeutic techniques that may be used in
ficient evidence that the treatment was isolation) or intervention classes (i.e., a com-
associated with harmful effects. bination of different intervention strategies
that have core characteristics in common).
Appendix 3 outlines the criteria for treat- Whenever possible, we combined interven-
ment effects. tion strategies into treatment classes in
The reason separate scores are required order to lend clarity to the effectiveness of
to determine scientific merit and treatment the treatment. When this was not possible,
effects is they tap into separate but equally we reported results on isolated intervention
important concerns related to each study. For strategies. The experts involved in the project
example, a study could have a very strong provided feedback when reviewing earlier
research design (high scientific merit) but drafts of this report. That is, they were given
show that the treatment was actually ineffec- the opportunity to provide input three times
tive. Decision-makers should be aware of a before the final 38 treatments were identified.
finding of this type. After we identified the treatments, we
Similarly, a study could have a relatively applied the Strength of Evidence Classifica-
weak research design (lower scientific merit) tion System criteria.
but show that the treatment was effective.
Scientists would not necessarily believe the
treatment was actually effective in this case
because the outcomes could be due to some
factor other than the treatment (e.g., the
passage of time, some unknown variable that
was not accounted for in the study, etc.).

Once we coded all studies, we combined


the results of the Scientific Merit Rating Scale
and the Treatment Effects Ratings to identify
the level of research support that is currently
4
  Reliability in the form of interobserver agreement was .92 for
treatment categorization.

National Standards Project  {  8


Strength of Evidence Classification System
The Strength of Evidence Classification System can be used to determine how
confident we can be about the effectiveness5 of a treatment. Ratings reflect the level
of quality, quantity, and consistency of research findings for each type of intervention.
There are four categories in the Strength of Evidence Classification System.6 Table 2
identifies the criteria associated with each of the ratings.

These general guidelines can be used to interpret each of these


categories:
◖◖ Established. Sufficient evidence is available to confidently determine that a treat-
ment produces favorable outcomes for individuals on the autism spectrum. That is,
these treatments are established as effective.

◖◖ Emerging. Although one or more studies suggest that a treatment produces


favorable outcomes for individuals with ASD, additional high quality studies must
consistently show this outcome before we can draw firm conclusions about treat-
ment effectiveness.

◖◖ Unestablished. There is little or no evidence to allow us to draw firm conclusions


about treatment effectiveness with individuals with ASD. Additional research may
show the treatment to be effective, ineffective, or harmful.

◖◖ Ineffective/Harmful. Sufficient evidence is available to determine that a treatment


is ineffective or harmful for individuals on the autism spectrum.

5
  Professionals often describe a treatment as “effective” when it has been shown to work in real world settings such as
home, school, and community. For the purposes of this report, the word “effective” refers to studies conducted in real world,
clinical, and research settings.
6
  The Strength of Evidence Classification System was modified to its current four-point format to ease interpretation of out-
comes for the general public. Although the Strength of Evidence Classification System was modified from a six-point format,
the interpretation of outcomes remains identical across formats. For example, all treatments that were previously identified
as having sufficient evidence of effectiveness did not vary across the two systems.

9  }  Findings and Conclusions


Table 2} Strength of Evidence Classification System

Established Emerging Unestablished Ineffective/Harmful

Severala published, peer- Fewb published, peer-reviewed May or may not be based on Severala published, peer-
reviewed studies studies research reviewed studies
••Scientific Merit Rating Scales ••Scientific Merit Rating Scale ••Beneficial treatment effects ••Scientific Merit Rating Scales
scores of 3, 4, or 5 scores of 2 reported based on very poorly scores of 3
controlled studies (scores of
••Beneficial treatment effects ••Beneficial treatment effects ••No beneficial treatment effects
0 or 1 on the Scientific Merit
for a specific target reported for one dependent reported for one dependent
Rating Scale)
variable for a specific target measure for a specific target
These may be supplemented
••Claims based on testimonials, (Ineffective)
by studies with lower scores These may be supplemented
unverified clinical observa-
on the Scientific Merit Rating by studies with higher or lower OR
tions, opinions, or speculation
Scale. scores on the Scientific Merit
••Adverse treatment effects
Rating Scale. ••Ineffective, unknown, or
reported for one dependent
adverse treatment effects
variable for a specific target
reported based on poorly
(Harmful)
controlled studies
Note: Ineffective treatments are
indicated with an “I” and Harm-
ful treatments are indicated
with an “H”

a
  Several is defined as 2 group design or 4 single-subject design studies with a minimum of 12 participants for which there are no con-
flicting results or at least 3 group design or 6 single-subject design studies with a minimum of 18 participants with no more than 1 study
reporting conflicting results. Group and single-case design methodologies may be combined.
b
  Few is defined as a minimum of 1 group design study or 2 single-subject design studies with a minimum of 6 participants for which no
conflicting results are reported.* Group and single-subject design methodologies may be combined.
*Conflicting results are reported when a better or equally controlled study that is assigned a score of at least 3 reports either {a} inef-
fective treatment effects or {b} adverse treatment effects.

National Standards Project  {  10


3 Outcomes

Established Treatments
We identified 11 treatments as Established (i.e., they were established as

effective) for individuals with Autism Spectrum Disorders (ASD). Established

Treatments are those for which several well-controlled studies have shown

the intervention to produce beneficial effects. There is compelling scientific

evidence to show these treatments are effective; however, even among

Established Treatments, universal improvements cannot be expected to

occur for all individuals on the autism spectrum.

The following interventions are Established Treatments:


◖◖ Antecedent Package
◖◖ Behavioral Package
◖◖ Comprehensive Behavioral Treatment for Young Children
◖◖ Joint Attention Intervention
◖◖ Modeling
◖◖ Naturalistic Teaching Strategies
◖◖ Peer Training Package
◖◖ Pivotal Response Treatment
◖◖ Schedules
◖◖ Self-management
◖◖ Story-based Intervention Package

Each of these treatments is defined below. Whenever possible, we provided


examples of treatment strategies associated with each Established Treatment. These
examples should also be considered Established Treatments for individuals with ASD.
The number of studies conducted that contributed to this rating is listed in brackets
after the treatment name.

11  }  Findings and Conclusions


Established Treatments with definitions and examples:
◖◖ Antecedent Package {99 studies}. These interventions involve the modification of situ-
ational events that typically precede the occurrence of a target behavior. These alterations are
made to increase the likelihood of success or reduce the likelihood of problems occurring.
Treatments falling into this category reflect research representing the fields of applied behav-
ior analysis (ABA), behavioral psychology, and positive behavior supports.

Examples include but are not restricted to: behavior chain interruption (for increasing behaviors); behavioral
momentum; choice; contriving motivational operations; cueing and prompting/prompt fading procedures; envi-
ronmental enrichment; environmental modification of task demands, social comments, adult presence, intertrial
interval, seating, familiarity with stimuli; errorless learning; errorless compliance; habit reversal; incorporating
echolalia, special interests, thematic activities, or ritualistic/obsessional activities into tasks; maintenance inter-
spersal; noncontingent access; noncontingent reinforcement; priming; stimulus variation; and time delay.

◖◖ Behavioral Package {231 studies}. These interventions are designed to reduce problem
behavior and teach functional alternative behaviors or skills through the application of basic
principles of behavior change. Treatments falling into this category reflect research repre-
senting the fields of applied behavior analysis, behavioral psychology, and positive behavior
supports.

Examples include but are not restricted to: behavioral sleep package; behavioral toilet training/dry bed train-
ing; chaining; contingency contracting; contingency mapping; delayed contingencies; differential reinforcement
strategies; discrete trial teaching; functional communication training; generalization training; mand training; non-
contingent escape with instructional fading; progressive relaxation; reinforcement; scheduled awakenings; shaping;
stimulus-stimulus pairing with reinforcement; successive approximation; task analysis; and token economy.

Treatments involving a complex combination of behavioral procedures that may be listed elsewhere in this docu-
ment are also included in the behavioral package category. Examples include but are not restricted to: choice +
embedding + functional communication training + reinforcement; task interspersal with differential reinforcement;
tokens + reinforcement + choice + contingent exercise + overcorrection; noncontingent reinforcement + differential
reinforcement; modeling + contingency management; and schedules + reinforcement + redirection + response
prevention. Studies targeting verbal operants also fall into this category.

National Standards Project  {  12


◖◖ Comprehensive Behavioral Treatment ◖◖ Joint Attention Intervention {6 studies}.
for Young Children {22 studies}. This These interventions involve building foun-
treatment reflects research from compre- dational skills involved in regulating the
hensive treatment programs that involve behaviors of others. Joint attention often
a combination of applied behavior analytic involves teaching a child to respond to the
procedures (e.g., discrete trial, inciden- nonverbal social bids of others or to initiate
tal teaching, etc.) which are delivered to joint attention interactions.
young children (generally under the age
of 8). These treatments may be delivered Examples include pointing to objects, showing items/
in a variety of settings (e.g., home, self- activities to another person, and following eye gaze.
contained classroom, inclusive classroom,
community) and involve a low student-to-
◖◖ Modeling {50 studies}. These interven-
tions rely on an adult or peer providing a
teacher ratio (e.g., 1:1). All of the studies
demonstration of the target behavior that
falling into this category met the strict
should result in an imitation of the tar-
criteria of: {a} targeting the defining
get behavior by the individual with ASD.
symptoms of ASD, {b} having treatment
Modeling can include simple and com-
manuals, {c} providing treatment with a
plex behaviors. This intervention is often
high degree of intensity, and {d} measuring
combined with other strategies such as
the overall effectiveness of the program
prompting and reinforcement.
(i.e., studies that measure subcomponents
of the program are listed elsewhere in this
Examples include live modeling and video modeling.
report).

These treatment programs may also be


referred to as ABA programs or behav-
ioral inclusive program and early intensive
behavioral intervention.

13  }  Findings and Conclusions


◖◖ Naturalistic Teaching Strategies ◖◖ Pivotal Response Treatment {14 stud-
{32 studies}. These interventions involve ies}.  This treatment is also referred to
using primarily child-directed interactions as PRT, Pivotal Response Teaching, and
to teach functional skills in the natural Pivotal Response Training. PRT focuses on
environment. These interventions often targeting “pivotal” behavioral areas — such
involve providing a stimulating environ- as motivation to engage in social commu-
ment, modeling how to play, encouraging nication, self-initiation, self-management,
conversation, providing choices and direct/ and responsiveness to multiple cues, with
natural reinforcers, and rewarding reason- the development of these areas having
able attempts. the goal of very widespread and fluently
integrated collateral improvements. Key
Examples of this type of approach include but aspects of PRT intervention delivery also
are not limited to focused stimulation, incidental focus on parent involvement in the inter-
teaching, milieu teaching, embedded teaching, vention delivery, and on intervention in the
and responsive education and prelinguistic milieu natural environment such as homes and
teaching. schools with the goal of producing natural-
ized behavioral improvements.
◖◖ Peer Training Package {33 studies}.
These interventions involve teaching This treatment is an expansion of Natural Language
children without disabilities strategies for Paradigm which is also included in this category.
facilitating play and social interactions with
children on the autism spectrum. Peers ◖◖ Schedules {12 studies}. These interven-
may often include classmates or siblings. tions involve the presentation of a task list
When both initiation training and peer that communicates a series of activities or
training were components of treatment steps required to complete a specific activ-
in a study, the study was coded as “peer ity. Schedules are often supplemented by
training package.” These interventions other interventions such as reinforcement.
may include components of other treat-
ment packages (e.g., self-management for Schedules can take several forms including written
peers, prompting, reinforcement, etc.). words, pictures or photographs, or work stations.

Common names for intervention strategies include


peer networks, circle of friends, buddy skills
package, Integrated Play Groups™, peer initiation
training, and peer-mediated social interactions.

National Standards Project  {  14


◖◖ Self-management {21 studies}. These ◖◖ Story-based Intervention Package
interventions involve promoting indepen- {21 studies}.  Treatments that involve a
dence by teaching individuals with ASD to written description of the situations under
regulate their behavior by recording the which specific behaviors are expected to
occurrence/non-occurrence of the target occur. Stories may be supplemented with
behavior, and securing reinforcement for additional components (e.g., prompting,
doing so. Initial skills development may reinforcement, discussion, etc.).
involve other strategies and may include
the task of setting one’s own goals. In Social Stories™ are the most well-known story-
addition, reinforcement is a component of based interventions and they seek to answer the
this intervention with the individual with “who,” “what,” “when,” “where,” and “why” in
ASD independently seeking and/or deliver- order to improve perspective-taking.
ing reinforcers.

Examples include the use of checklists (using


checks, smiley/frowning faces), wrist counters,
visual prompts, and tokens.

15  }  Findings and Conclusions


The Established

Treatments identified

in this document arise

from diverse theoretical

orientations or fields of study.

However, certain trends emerged from

an examination of these Established Treatments. Story-based Intervention Package) of the total


Approximately two-thirds of the Established number of Established Treatments arose from the
Treatments were developed exclusively from the theory of mind perspective. Interestingly, even
behavioral literature (e.g., applied behavior analy- these interventions often included a behavioral
sis, behavioral psychology, and positive behavioral component.
supports). Of the remaining one-third, 75% repre-
This pattern of findings suggests that treatments
sent treatments for which research support comes
from the behavioral literature have the strongest
predominantly from the behavioral literature.
research support at this time. Yet it is important
Additional contributions were made from the non-
to recognize that treatments based on alternative
behavioral literature emanating from the fields of
theories, in isolation or combined with behavioral
speech-language pathology and special education.
interventions, should continue to be examined
These researchers often gave strong emphasis to
empirically. Further, it demonstrates that all treat-
developmental considerations. Less than 10% (i.e.,
ment studies can be compared against a common

methodological standard and show evidence

of effectiveness. Despite the preponderance of

evidence associated with the behavioral litera-

ture, it is important to acknowledge the important

contributions non-behavioral approaches are

making at present, and to fund research

examining both the behavioral and

non-behavioral literature as

we move forward.

National Standards Project  {  16


Detailed Summary of Established Treatments
Most treatments are not intended to address every treatment target (i.e., skills to
be increased or behaviors to be decreased). Similarly, they may not be developed with
the expectation that they will target every age or diagnostic group. For example, joint
attention is a skill set that typically develops in very young children. Knowing this, we
would expect to see most of the research on joint attention conducted with infants,
toddlers, or preschool-aged children. In fact, this is exactly what our review shows.
However, whenever a treatment could reasonably be effective for different treatment
targets, age groups, or diagnostic groups, researchers should set as a goal to extend
research into these different targets or groups.

Table 3 shows which Established Treatments have demonstrated favorable out-


comes for each treatment target, age group, or diagnostic group. Although not all
Established Treatments should be expected to apply to each of these areas, many of
these interventions could be applied to a broader array of treatments. A brief summary
follows.

Treatment Targets
Established Treatments have demonstrated favorable outcomes for many treat-
ment targets. See Appendix 4 for definitions for each of the treatment targets.
◖◖ Antecedent Package, Behavioral Package, and Comprehensive Behavioral Treat-
ment for Young Children have demonstrated favorable outcomes with more
than half of the skills that are often targeted to be increased (see Table 3 for
examples).
◖◖ Behavioral Package has demonstrated favorable outcomes with three-quarters of
the behaviors that are often targeted to decrease (see Table 3 for examples).
◖◖ Other Established Treatments have demonstrated favorable outcomes with a
smaller range of treatment targets. In many cases, this provides a rich opportu-
nity to extend research findings.

17  }  Findings and Conclusions


Age Groups Diagnostic Groups
Established Treatments have dem- Established Treatments have dem-
onstrated favorable outcomes with onstrated favorable outcomes with
many age groups. many diagnostic groups.
◖◖ Behavioral Package has demon- ◖◖ Behavioral Package, Compre-
strated favorable outcomes with hensive Behavioral Treatment for
all age groups. Young Children, Joint Attention
◖◖ Antecedent Package, Compre- Intervention, Modeling, Naturalis-
hensive Behavioral Treatment for tic Teaching Strategies, and Peer
Young Children, Modeling, and Training Package have demon-
Self-management have demon- strated favorable outcomes with
strated favorable outcomes with most diagnostic groups.
two-thirds of all age groups. ◖◖ A few Established Treatments
◖◖ Naturalistic Teaching Strategies (i.e., Modeling and Story-based
have demonstrated favorable Intervention Package) have been
outcomes with one-half of all age associated with favorable out-
groups. comes for Asperger’s Syndrome.
Further investigation is necessary
◖◖ Only one Established Treatment
for this diagnostic group.
has been associated with favor-
able outcomes for the early adult ◖◖ Other Established Treatments have
age group. Further investigation is demonstrated favorable outcomes
necessary for this age group. with a smaller range of diagnostic
groups. In many cases, this pro-
◖◖ Other Established Treatments have
vides a rich opportunity to extend
demonstrated favorable outcomes
research findings.
with a small range of age groups.
In many cases, this provides a rich
opportunity to extend research
findings.

National Standards Project  {  18


Table 3} Established Treatments with Favorable Outcomes Reported
Skills Increased

Academic Communication Higher Cognitive Functions Interpersonal Learning Readiness


Behavioral Package Antecedent Package CBTYC Antecedent Package Antecedent Package
Behavioral Package Modeling Behavioral Package Behavioral Package
CBTYC CBTYC NTS
Joint Attention Joint Attention
Modeling Modeling
NTS NTS
Peer Training Peer Training
PRT PRT
Self-management
Story-based
Motor Personal Responsibility Placement Play Self-Regulation
CBTYC Antecedent Package CBTYC Antecedent Package Antecedent Package
Behavioral Package Behavioral Package Behavioral Package
CBTYC CBTYC Schedules
Modeling Modeling Self-management
NTS Story-based
Peer Training
PRT

Behaviors Decreased

Problem Behaviors Restricted, Repetitive, Nonfunctional Behavior, Sensory/Emotional General Symptoms


Interests, or Activities Regulation
Antecedent Package Behavioral Package Antecedent Package CBTYC
Behavioral Package Peer Training Behavioral Package
CBTYC Modeling
Modeling
Self-management

Ages

0-2 3-5 6-9 10-14 15-18 19-21


Behavioral Antecedent Antecedent Antecedent Antecedent Behavioral
CBTYC Behavioral Behavioral Behavioral Behavioral
Joint Attention CBTYC CBTYC Modeling Modeling
NTS Joint Attention Modeling Peer Training Self-management
Modeling NTS Schedules
NTS Peer Training Self-management
Peer Training PRT Story-based
PRT Schedules
Schedules Self-management
Self-management Story-based

Diagnostic Classification

Autistic Disorder Asperger’s Syndrome PDD-NOS


Antecedent Peer Training Modeling Behavioral Package
Behavioral PRT Story-based CBTYC
CBTYC Schedules Joint Attention
Joint Attention Self-management Modeling
Modeling Story-based NTS
NTS Peer Training
Antecedent=Antecedent Package; Behavioral=Behavioral Package; CBTYC=Comprehensive Behavioral Treatment for Young Children; Joint
Attention=Joint Attention Intervention; NTS=Naturalistic Teaching Strategies; Peer Training=Peer Training Package; PRT=Pivotal Response
Treatment; Story-based=Story-based Intervention Package

19  }  Findings and Conclusions


Emerging Treatments
Emerging Treatments are those for which one or more studies suggest the

intervention may produce favorable outcomes. However, additional high

quality studies that consistently show these treatments to be effective for

individuals with ASD are needed before we can be fully confident that the

treatments are effective. Based on the available evidence, we are not yet in

a position to rule out the possibility that Emerging Treatments are, in fact, not

effective.

A large number of studies fall into the “Emerging” level of evidence. We believe
scientists should find fertile ground for further research in these areas. The number of
studies conducted that contributed to this rating is listed in parentheses after the treat-
ment name.

The following treatments have been identified as falling into the Emerging
level of evidence:
◖◖ Augmentative and Alternative Communication Device {14 studies}
◖◖ Cognitive Behavioral Intervention Package {3 studies}
◖◖ Developmental Relationship-based Treatment {7 studies}
◖◖ Exercise {4 studies}
◖◖ Exposure Package {4 studies}
◖◖ Imitation-based Interaction {6 studies}
◖◖ Initiation Training {7 studies}
◖◖ Language Training (Production) {13 studies}
◖◖ Language Training (Production & Understanding) {7 studies}
◖◖ Massage/Touch Therapy {2 studies}
◖◖ Multi-component Package {10 studies}

National Standards Project  {  20


◖◖ Music Therapy {6 studies}
◖◖ Peer-mediated Instructional Arrangement {11 studies}
◖◖ Picture Exchange Communication System {13 studies}
◖◖ Reductive Package {33 studies}
◖◖ Scripting {6 studies}
◖◖ Sign Instruction {11 studies}
◖◖ Social Communication Intervention {5 studies}
◖◖ Social Skills Package {16 studies}
◖◖ Structured Teaching {4 studies}
◖◖ Technology-based Treatment {19 studies}
◖◖ Theory of Mind Training {4 studies}

Each of these treatments is defined in Appendix 5. Interested readers may wish to refer to the full
National Standards Report for additional details regarding these treatments.

21  }  Findings and Conclusions


Unestablished Treatments
Unestablished Treatments are those for which there is little or no evidence

in the scientific literature that allows us to draw firm conclusions about the

effectiveness of these interventions with individuals with ASD. There is no

reason to assume these treatments are effective. Further, there is no way to

rule out the possibility these treatments are ineffective or harmful.

The following treatments have been identified as falling into the


Unestablished level of evidence:
◖◖ Academic Interventions {10 studies}
◖◖ Auditory Integration Training {3 studies}
◖◖ Facilitated Communication {5 studies}
Note: The National Standards Project followed strict inclusionary/exclusionary
criteria. As a result, we eliminated a large number of studies on the treatment
of Facilitated Communication that {a} involved adults 22 years of age or older,
{b} involved individuals with infrequently occurring co-morbid conditions, and
{c} focused on the adult facilitators (as opposed to the individuals with ASD).
Although our results indicate Facilitated Communication is an “Unestablished
Treatment,” we believe it is necessary to make readers aware that a number of
professional organizations have adopted resolutions advising against the use
of facilitated communication. These resolutions are often related to concerns
regarding “immediate threats to the individual civil and human rights of the per-
son with autism…” (American Psychological Association, 1994).

National Standards Project  {  22


◖◖ Gluten- and Casein-Free Diet {3 studies}
Note: Early studies suggested that the Gluten- and Casein-Free diet may pro-
duce favorable outcomes but did not have strong scientific designs. Better
controlled research published since 2006 suggests there may be no educational
or behavioral benefits for these diets. Further, potential medically harmful effects
have begun to be reported in the literature. We recommend reading the following
studies before considering this option:

1. Arnold, G. L., Hyman, S. L., Mooney, R. A., & Kirby, R. S. (2003). Plasma
amino acids profiles in children with autism: Potential risk of nutritional defi-
ciencies, Journal of Autism and Developmental Disabilities, 33, 449-454.
2. Heiger, M. L., England, L. J., Molloy, C. A., Yu, K. F., Manning-Courtney, P., &
Mills, J. L. (2008). Reduced bone cortical thickness in boys with autism or
autism spectrum disorders. Journal of Autism and Developmental Disorders,
38, 848-856.

◖◖ Sensory Integrative Package {7 studies}

Each of these treatments is defined in Appendix 5. Interested readers may wish to refer to the full
National Standards Report for additional details regarding these treatments.

There are likely many more treatments that fall into this category for which no research has been
conducted or, if studies have been published, the accepted process for publishing scientific work
was not followed. There are a growing number of treatments that have not yet been investigated
scientifically. These would all be Unestablished Treatments. Further, any treatments for which stud-
ies were published exclusively in non-peer-reviewed journals would be Unestablished Treatments.

23  }  Findings and Conclusions


Ineffective/Harmful Treatments
Ineffective or Harmful Treatments are those for which several well-controlled

studies have shown the intervention to be ineffective or to produce harmful

outcomes, respectively. At this time, there are no treatments that have suffi-

cient evidence specific to the ASD population that meet these criteria.

This outcome is not entirely unexpected. When preliminary research findings sug-
gest a treatment is ineffective or harmful, researchers tend to change the focus of their
scientific inquiries into treatments that may be effective. That is, research often stops
once there is a suggestion that the treatment does not work or that it is harmful. Fur-
ther, research showing a treatment to be ineffective or harmful may be available with
different populations (e.g., developmental disabilities, general populations, etc.). Ethical
researchers are not going to then apply these ineffective or harmful treatments specifi-
cally to children or adolescents on the autism spectrum just to show that the treatment
is equally ineffective or harmful with individuals with ASD.

See the Evidence-based Practice section to learn how practitioners’ knowledge of


interventions outside the ASD population should be integrated into the decision-making
process.

National Standards Project  {  24


4 Recommendations for
Treatment Selection
Treatment selection is complicated and should be made by a team of indi-

viduals who can consider the unique needs and history of the individual with

Autism Spectrum Disorder (ASD) along with the environments in which he or

she lives. We do not intend for this document to dictate which treatments can

or cannot be used for individuals on the autism spectrum.

Having stated this, we have been asked by families, educators, and service provid-
ers to recommend how our results might be helpful to them in their decision-making.
As an effort to meet this request, we provide suggestions regarding the interpretation
of our outcomes. In all cases, we strongly encourage decision-makers to select an
evidence-based practice approach.

Research findings are not the sole factor that should be considered when treat-
ments are selected. The suggestions we make here refer only to the “research
findings” component of evidence-based practice and should be only one factor consid-
ered when selecting treatments.

25  }  Findings and Conclusions


Recommendations based on research findings:
◖◖ Established Treatments have sufficient evidence of effectiveness. We recommend
the decision-making team give serious consideration to these treatments because
{a} these treatments have produced beneficial effects for individuals involved in the
research studies published in the scientific literature, {b} access to treatments that
work can be expected to produce more positive long-term outcomes, and {c} there
is no evidence of harmful effects. However, it should not be assumed that these
treatments will universally produce favorable outcomes for all individuals on the
autism spectrum.
◖◖ Given the limited research support for Emerging Treatments, we generally do not
recommend beginning with these treatments. However, Emerging Treatments
should be considered promising and warrant serious consideration if Established
Treatments are deemed inappropriate by the decision-making team. There are
several very legitimate reasons this might be the case (see examples in the
Professional Judgment or Values and Preferences sections of Chapter 5).
◖◖ Unestablished Treatments either have no research support or the research that has
been conducted does not allow us to draw firm conclusions about treatment effec-
tiveness for individuals with ASD. When this is the case, decision-makers simply do
not know if this treatment is effective, ineffective, or harmful because researchers
have not conducted any or enough high quality research. Given how little is known
about these treatments, we would recommend considering these treatments only
after additional research has been conducted and this research shows them to pro-
duce favorable outcomes for individuals with ASD.

These recommendations should be considered along with other sources of critical


information when selecting treatments (see Chapter 5).

National Standards Project  {  26


5 Evidence-based Practice

One of the primary objectives of this document is to identify evidence-based

treatments. We are not alone in this activity. The National Standards Project

is a natural extension of the efforts of the National Research Council {2001},

the New York State Department of Health, Early Intervention Division {1999},

and other related documents produced at state and national levels.

Knowing which treatments have sufficient evidence of effectiveness is likely


to — and should — influence treatment selection. Evidence-based practice, however, is
more complicated than simply knowing which treatments are effective. Although we
argue that knowing which treatments have evidence of effectiveness is essential, other
critical factors must also be taken into consideration.

We have identified the following four factors of evidence-based practice:


◖◖ Research Findings. The strength of evidence ratings for all treatments being
considered must be known. Serious consideration should be given to Established
Treatments because there is sufficient evidence that {a} the treatment produced
beneficial effects and {b} they are not associated with unfavorable outcomes (i.e.,
there is no evidence that they are ineffective or harmful) for individuals on the
autism spectrum.
Ideally, treatment selection decisions should involve discussing the benefits of
various Established Treatments. Despite the fact there is compelling evidence to
suggest these treatments generally produce beneficial effects for individuals on
the autism spectrum, there are reasons alternative treatments (e.g., Emerging
Treatments) might be considered. A number of these factors are listed below.

◖◖ Professional Judgment. The judgment of the professionals with expertise in


Autism Spectrum Disorders (ASD) must be taken into consideration. Once treat-
ments are selected, these professionals have the responsibility to collect data to
determine if a treatment is effective. Professional judgment may play a particularly
important role in decision-making when:
◗◗ A treatment has been correctly implemented in the past and was not effective
or had harmful side effects. Even Established Treatments are not expected to
produce favorable outcomes for all individuals with ASD.

27  }  Findings and Conclusions


◗◗ The treatment is contraindicated based on other information (e.g., the use of extra-stimulus
prompts for a child with a prompt dependency history).
◗◗ A great deal of research support might be available beyond the ASD literature and should
be considered when required. For example, if an adolescent with ASD presents with
anxiety or depression, it might be necessary to identify what treatments are effective
for anxiety or depression for the general population. The decision to incorporate outside
literature into decision-making should only be made after practitioners are familiar with the
ASD-specific treatments. Research that has not been specifically demonstrated to be effec-
tive with individuals with ASD should be given consideration along with the ASD-specific
treatments only if compelling data support their use and the ASD-specific literature has not
fully investigated the treatment.
◗◗ The professional may be aware of well-controlled studies that support the effectiveness
of a treatment that were not available when the National Standards Project terminated its
literature search.

◖◖ Values and Preferences. The values and preferences of parents, careproviders, and the
individual with ASD should be considered. Stakeholder values and preference may play a par-
ticularly important role in decision-making when:
◗◗ A treatment has been correctly implemented in the past and was not effective or had
harmful side effects.
◗◗ A treatment is contrary to the values of family members.

◗◗ The individual with ASD indicates that he or she does not want a specific treatment.

◖◖ Capacity. Treatment providers should be well positioned to correctly implement the interven-
tion. Developing capacity and sustainability may take a great deal of time and effort, but all
people involved in treatment should have proper training, adequate resources, and ongoing
feedback about treatment fidelity. Capacity may play a particularly important role in decision-
making when:
◗◗ A service delivery system has never implemented the intervention before. Many of these
treatments are very complex and require precise use of techniques that can only be devel-
oped over time.
◗◗ A professional is considered the “local expert” for a given treatment but he or she actually
has limited formal training in the technique.
◗◗ A service delivery system has implemented a system for years without a process in place
to ensure the treatment is still being implemented correctly.

National Standards Project  {  28


6 Limitations

Like other projects of this nature, there are limitations to the National

Standards Project. Readers should be familiar with these limitations in order

to use this document most effectively.

We have indentified the following limitations:


◖◖ This document focuses exclusively on research involving individuals with Autism
Spectrum Disorders (ASD) who are under 22 years of age.
◗◗ This document does not include a review of the literature for children “at risk”
for ASD. New evidence suggests that very young children who are eventually
diagnosed with autism have a genetic predisposition that alters their interactions
with the typical learning environment.7 This area is especially important because
providing effective interventions (e.g., behavioral interventions) to these infants
may be the first critical step to altering early brain development8 so that the neu-
ral circuitry regulating social and communication functions more effectively.
◗◗ This document does not include a review of the adult ASD literature.

◗◗ This document is not an exhaustive review of all treatments for all individuals.
There are treatments that might have solid research support for related popula-
tions (e.g., developmental disabilities, anxiety, depression, etc.) but have limited
or no evidence of research support for individuals with ASD in the National Stan-
dards Report. See Chapter 5 for how this might influence treatment selection.
◖◖ As noted in the treatment classification section of this report, determining the
categories for treatments presents a real challenge. This is equally true whenever
comprehensive reviews of the literature are completed for any diagnostic group.
Some of our experts suggested making the unit of analysis larger for some catego-
ries; others suggested making the unit of analysis smaller for most categories. In
the end, we attempted to develop categories that “made sense.” We expect that

7
  Klin, A., Lin, D.J., Gorrindo, P., Ramsay, G., & Jones, W. (2009). Two-year-olds with autism orient to non-social contingen-
cies rather than biological motion. Nature, 1-7. doi:10.1038/nature07868.
8
  Dawson, G. (2008). Early behavioral intervention, brain plasticity, and the prevention of autism spectrum disorders.
Development and Psychopathology, 20, 775-803.

29  }  Findings and Conclusions


many readers may be interested in more ◗◗ We only included studies that have
detailed analysis using a smaller unit been published in professional jour-
of analysis, or data using on a different nals. It is likely that some researchers
arrangement of treatment categories conducted studies that provided
based on a larger unit of analysis. different or additional data that have
We look forward to your feedback to not been published. This could influ-
guide the next version of the National ence the reported quality, quantity, or
Standards Project. consistency of research findings.
◖◖ This review included an examination of ◖◖ When establishing interobserver agree-
most group and single-subject research ment (IOA), field reviewers were asked
design studies but did not include every to examine the coding manual and rate
type of study. the pilot article they received. Ideally, we
◗◗ For this report, we only looked would have conducted a training session
at research that was designed to before they began rating the articles.
answer questions about the measur- Also, the pilot articles were selected
able effectiveness of an intervention randomly. Now that we have identified
based on quantifiable data. We articles with the highest, moderate, and
did not look at research that was lowest ratings for both single-subject
designed to explore questions about and group research designs, we will use
the perceived quality of an interven- these articles for establishing IOA in
tion or the experiences of the children future versions of the National Standards
based on qualitative data. Project.
◗◗ There are studies relying on single- ◖◖ We did not include articles reviewed
case or group design methods that in languages other than English. This
were not included in this review has the potential to influence the rat-
because they fell outside the com- ings reported in this document. For
monly agreed-upon criteria for example, a study that was not included
evaluating the effectiveness of study in this review was published in French
outcomes. The experts involved in on Integrated Play Groups™ (Richard
the development of these Standards & Goupil, 2005). We hope to include
made the decision to include only volunteer field reviewers from across
those methodologies that are gen- the world who can effectively review the
erally agreed-upon by scientists as non-English literature in the next version
sufficient for answering the question, of the National Standards Project.
“Is this treatment effective?”.

National Standards Project  {  30


◖◖ The National Standards Project did not evaluate the extent to which treatment
approaches have been studied in “real world” versus laboratory settings. We hope
to shed light on this issue in future versions of the National Standards Project.
◖◖ One of the primary purposes of the National Standards Project was to identify
the level of research support currently available for a range of educational and
behavioral interventions. We did not set as our goal the determination of the level
of intensity required for delivery of these interventions. The next version of the
National Standards Project may provide further analysis in this area. In the interim,
we believe treatment providers should continue to follow the recommendations for
intensity of services provided by the National Research Council regarding children
less than 8 years of age. Specifically,

“  The committee recommends that educational services begin as soon as a child is suspected of having

an autistic spectrum disorder. Those services should include a minimum of 25 hours a week, 12 months

a year, in which the child is engaged in systematically planned, and developmentally appropriate edu-

cational activity toward identified objectives. What constitutes these hours, however, will vary accord-

ing to a child’s chronological age, developmental level, specific strengths and weaknesses, and family

needs. Each child must receive sufficient individualized attention on a daily basis so that adequate

implementation of objectives can be carried out effectively. The priorities of focus include functional

spontaneous communication, social instruction delivered throughout the day in various settings,

cognitive development and play skills, and proactive approaches to behavior problems. To the extent

that it leads to the acquisition of children’s educational goals, young children with an autistic spectrum

disorder should receive specialized instruction in a setting in which ongoing interactions occur with


typically developing children.

We argue that unless compelling reasons exist to do otherwise, intervention


services should be comprised of Established Treatments and they should be deliv-
ered following the specifications outlined in the literature (e.g., appropriate use of
resources, staff to student ratio, following the prescribed procedures, etc.).

31  }  Findings and Conclusions


◖◖ Writing a report of this type can be quite time-consuming. The National Standards
Project terminated the literature review phase in September of 2007. Additional
studies have been published in the interim that are not reflected in the current
report. This means that if a review were conducted today, the strength of evi-
dence ratings for a given treatment may have improved or be altered. We intend
to regularly update this document to assist decision-makers in their selection of
treatments. In the meantime, professionals should familiarize themselves with the
literature published since the fall of 2007.
◖◖ Ideally, research answers important questions beyond treatment effectiveness.
This report does not review the following areas that may be important in selecting
treatments:
◗◗ Cost-effectiveness;

◗◗ Social validity;

◗◗ Studies examining mediating or moderating variables. Mediating variables can


help explain why a treatment is effective. Moderating variables can make a differ-
ence in the likelihood a treatment is effective for a given subpopulation; and
◗◗ Research supporting Established Treatments may have been developed in analog
settings (e.g., highly structured research settings), which may not reflect real
world settings accurately.

Despite its limitations, we sincerely hope this document is useful to you. We also recognize that
even more information might be helpful. For example, there may be new or different ways of orga-
nizing information that you believe could be useful. If you would like to help shape the direction of
the next version of the National Standards Project, please provide feedback to the National Autism
Center at info@nationalautismcenter.org.

National Standards Project  {  32


7 Future Directions

Future Directions for the Scientific


Community
One of the goals of the National Standards Project is to identify limitations

of the existing literature base. We believe we have done so in two ways: {a}

we have identified areas benefiting from or requiring future investigation

and {b} we have developed the Scientific Merit Rating Scale and Strength of

Evidence Classification System, against which future research can be com-

pared. We expand on these issues below.

There is room for additional research for all treatments. It will be important to
extend the current research base for Established Treatments to all reasonable treat-
ment goals, age groups, and diagnostic groups. Additional research must be conducted
for treatments falling in the Emerging and Unestablished Treatment categories to
determine if {a} the treatments are effective and {b} the treatments are ineffective or
harmful. High quality research is perhaps most important for treatments falling into the
Unestablished Treatments category.

33  }  Findings and Conclusions


Future Directions with Methodology
Five dimensions were identified for the Scientific Merit Rating Scale: {a}

research design, {b} dependent variable, {c} treatment fidelity, {d} partici-

pant ascertainment, and {e} generalization (see Table 3). We identified these

dimensions based on the most recent scientific standards that are being

advocated in behavioral and social science research. However, scientific

standards change over time.

For example, there were no psychometrically sound instruments specifically


designed to diagnose Autism Spectrum Disorders (ASD) available when the earliest
studies included in this review were conducted. If there had been, the instruments
would look very different today based on changes in the diagnostic criteria over the
years. For this reason, it is not surprising that many older studies did not achieve the
highest possible ratings in this area.

Similarly, it is only recently that evidence of treatment fidelity has been consistently
emphasized by the scientific community. This means that although many studies may
do an excellent job of describing the procedures used, they still received low rat-
ings on their ability to provide evidence that they completed all procedures exactly as
prescribed. This leaves room for improvement in the scientific literature in either the
research design or the extent to which scientists report on these important variables.

We encourage researchers to strive to meet the most rigorous standards of scien-


tific merit in future research. We hope the Scientific Merit Rating Scale will assist them

National Standards Project  {  34


in doing so. But it is also essential that journal editors recognize the importance of the
five dimensions of scientific merit identified in this report. Important information may
sometimes be cut from articles due to space limitations. We hope that researchers will
be able to point to the Scientific Merit Rating Scale as an example of critical informa-
tion that should never be removed from scholarly work.

The Strength of Evidence Classification System may be expanded over time to


reflect additional scientific lines of inquiry. For example, it is reasonable to use alternate
criteria for different research designs, which is why we did so in the current version
of the Strength of Evidence Classification System. However, if qualitative research
is included in the next version of the National Standards Project, the current version
of the Strength of Evidence Classification System would be insufficient to accurately
evaluate these studies.

35  }  Findings and Conclusions


Future Directions for the National
Standards Report
We aim to address many of the limitations of the current National Standards

Report in future documents.

For example, we expect:


◖◖ To review literature covering the lifespan. This will include a special section on chil-
dren “at risk” for ASD.
◖◖ To reconsider the inclusion of qualitative studies or other types of peer-reviewed
studies that are currently excluded.
◖◖ To modify treatment classification based on feedback from the many experts in the
autism community.
◖◖ To examine the extent to which treatments have been studied in “real world”
versus laboratory settings.
◖◖ To add reviewers who can accurately interpret peer-reviewed articles published in
non-English journals.

With additional funding, we hope to help address questions related to cost effec-
tiveness, social validity, studies examining mediating variables, and effectiveness of
treatments in real world settings.

We suspect that this report will raise additional questions that we hope to address
in future publications. Our ultimate goal is to answer relevant questions related to
evidence-based practice in response to the changing expectations of professionals and
the needs of families, educators, and service providers.

National Standards Project  {  36


37  }  Appendices

Appendix 1} Inclusionary and Exclusionary Criteria

Inclusionary Criteria
The National Standards Project is a systemic review of the behavioral and educational treatment literature
involving individuals with Autism Spectrum Disorders (ASD) under the age of 22. For the purposes of this
review, Autism Spectrum Disorders were defined to include Autistic Disorder, Asperger’s Syndrome, and
Pervasive Developmental Disorder — Not Otherwise Specified (PDD-NOS).

Exclusionary Criteria
Participants who were identified as “at risk” for an ASD or who were described as having “autistic
characteristics” or “a suspicion of ASD” were not included in this review.
Studies were included if the treatments could have been implemented in or by school systems, including
toddler, early childhood, home-based, school-based, and community-based programs.
Studies in which parents, care providers, educators, or service providers were the sole subject of treatment
were not included in the review. If these adults were one subject but data were also available regarding
changes in child behavior or skills, the study was retained, but only those results pertaining to the child’s
behavior or skills were included in the review.
Articles were only included in the review if they had been published in peer-reviewed journals.
Studies examining biochemical, genetic, and psychopharmacological treatments were excluded (see
exception below). These treatments have not historically focused on the core characteristics of ASD.
We made the decision to include curative diets because professionals are often expected to implement
curative diets across a variety of settings with a high degree of fidelity and the treatment is intended to
address the core characteristics of ASD.
Results for study participants who were diagnosed with both ASD and co-morbid conditions that do
not commonly co-occur with ASD were excluded from this review because their results could skew the
outcomes.
Articles were excluded if they did not include empirical data, if there were no statistical analyses available
for studies using group research design, if there was no linear graphical presentation of data for studies
using single-case research design, or if the studies relied on qualitative methods.
Studies were excluded if their sole purpose was to identify mediating or moderating variables.
Articles were excluded if all participants were over the age of 22 or if a study included participants both
over and under the age of 22, but separate analyses were not conducted for individuals under the age of
22. We anticipate the next version of the National Standards Project will expand the focus of the review to
include treatments involving participants across the lifespan.
Articles were excluded from the National Standards Project if they were published exclusively in
languages other than English.
Findings and Conclusions: National Standards Project  (  38

Appendix 2} Scientific Merit Rating Scale

SMRS} Rating 5
Measurement of
Measurement of Independent Variable Participant Generalization
Research Design
Dependent Variable (procedural integrity or Ascertainment of Tx Effect(s)
treatment fidelity)
Group Single- Test, scale, Direct
subjecta checklist, behavioral
etc. observation
Number of A minimum Type of Type of Implementation accuracy Diagnosed Objective data
groups: two or of three measurement: measurement: measured at > 80% by a qualified
Maintenance data
more comparisons Observation- continuous professional
Implementation accuracy collected
of control and based or discon-
Design: measured in 25% of total Diagnosis confirmed
treatment tinuous with AND
Random Protocol: sessions by independent and
conditions calibration Generalization data
assignment standardized blind evaluators for
data showing IOA for treatment fidelity
and/or no Number of research purposes collected across
Psychometric low levels of > 80%
significant data points using at least one at least two of the
properties error
differences per condition: psychometrically following: setting,
solid instru-
pre-Tx > five Reliability: solid instrument stimuli, persons
ment
IOA > 90% or
Participants: n Number of DSM or ICD
Evaluators: kappa > .75
> 10 per group participants: > criteria or commonly
blind and
or sufficient three Percentage accepted criteria
independent
power for of sessions: during the identified
Data loss:
lower number Reliability time period reported
no data loss
of participants collected in > to be met
possible
25%
Data Loss: no
data loss Type of condi-
tions in which
data were
collected: all
sessions
39  }  Appendices

SMRS} Rating 4
Measurement of
Measurement of Independent Variable Participant Generalization
Research Design
Dependent Variable (procedural integrity or Ascertainment of Tx Effect(s)
treatment fidelity)
Group Single- Test, scale, Direct
subjecta checklist, behavioral
etc. observation
Number of A minimum Type of Type of Implementation accuracy Diagnosis provided/ Objective data
groups: two or of three measurement: measurement: measured at > 80% confirmed by
Maintenance data
more comparisons Observation- continuous or independent and
Implementation accuracy collected
of control and based discontinu- blind evaluators for
Design: measured in 20% of total
treatment measurement ous with no research purposes AND
Matched session for focused interven-
conditions calibration using at least one Generalization data
groups; No Protocol: tions only
data psychometrically collected across
significant Number of standardized
IOA for treatment fidelity: sufficient instrument
differences data points Reliability: at least one of the
Psychometric not reported
pre-Tx; or bet- per condition: IOA > 80% or following: setting,
properties
ter design > five kappa > .75 stimuli, persons
sufficient
Participants: n Number of Percentage
Evaluators:
> 10 per group participants: > of sessions:
blind
or sufficient three Reliability
power for OR collected in >
Data loss:
lower number independent 25%
some data
of participants
loss possible Type of condi-
Data Loss: tions in which
some data data were
loss possible collected: all
sessions
Findings and Conclusions: National Standards Project  (  40

SMRS} Rating 3
Measurement of
Measurement of Independent Variable Participant Generalization
Research Design
Dependent Variable (procedural integrity or Ascertainment of Tx Effect(s)
treatment fidelity)
Group Single- Test, scale, Direct
subjecta checklist, behavioral
etc. observation
Number of A minimum Type of Type of Implementation accuracy Diagnosis provided/ Objective data
groups: two or of two measurement: measurement: measured at > 80% confirmed by
Maintenance data
more comparisons Observation- continuous or independent
Implementation accuracy collected
of control and based discontinu-
Design: Pre-Tx measured in 20% of partial OR
treatment measurement ous with no OR
differences session for focused interven-
conditions calibration blind evalua-
controlled Protocol: tions only Generalization data
data tor for research
statistically or Number of non-stan- collected across
IOA for treatment fidelity: purposes using at
better design data points dardized or Reliability: at least one of the
not reported least one psycho-
per condition: standardized IOA > 80% or following: setting,
Data loss: metrically adequate
> three kappa > .4 stimuli, persons
some data Psychometric instrument
loss possible Number of properties Percentage
OR
participants: adequate of sessions:
> two Reliability DSM criteria con-
Evaluators:
collected in > firmed by a qualified
Data loss: neither blind
20% diagnostician or
some data nor indepen-
independent and/or
loss possible dent required Type of condi-
blind evaluator
tions in which
data were col-
lected: all or
experimental
sessions only
41  }  Appendices

SMRS} Rating 2
Measurement of
Measurement of Independent Variable Participant Generalization
Research Design
Dependent Variable (procedural integrity or Ascertainment of Tx Effect(s)
treatment fidelity)
Group Single- Test, scale, Direct
subjecta checklist, behavioral
etc. observation
Number of A minimum Type of Type of Control condition is Diagnosis with at Subjective data
groups and of two measurement: measurement: operationally defined at an least one psycho-
Maintenance data
Design: If two comparisons Observation- continuous or inadequate level or better metrically modest
collected
groups, pre-Tx of control and based or discontinu- instrument
Experimental (Tx) procedures
difference treatment subjective ous with no AND
are operationally defined at a OR
not controlled conditions calibration Generalization data
Protocol: rudimentary level or better
or better data diagnosis provided
Number of non-stan- collected across
research Implementation accuracy by a qualified diag-
data points dardized or Reliability: at least 1 of the
design measured at > 80% nostician or blind
per Tx condi- standardized IOA > 80% or following: setting,
and/or independent
OR tion: > three kappa > .4 Implementation accuracy stimuli, persons
Psychometric evaluator with no
regarding percentage of
a one group Number of properties Percentage of reference to psycho-
total or partial sessions: not
repeated participants: modest sessions: Not metric properties of
reported
measures pre- > two reported instrument
Evaluators:
test/post-test IOA for treatment fidelity:
Data loss: sig- neither blind Type of condi-
design not reported
nificant data nor indepen- tions in which
Data Loss: loss possible dent required data were
significant collected: not
data loss necessarily
possible reported
Operational
definitions are
extensive or
rudimentary
Findings and Conclusions: National Standards Project  (  42

SMRS} Rating 1
Measurement of
Measurement of Independent Variable Participant Generalization
Research Design
Dependent Variable (procedural integrity or Ascertainment of Tx Effect(s)
treatment fidelity)
Group Single- Test, scale, Direct
subjecta checklist, behavioral
etc. observation
Number of A minimum Type of Type of Control condition is Diagnosis provided Subjective
groups and of two measurement: measurement: operationally defined at an by {a} review of or subjective
Design: comparisons Observation- continuous or inadequate level or better records supplemented with
two group, of control and based or discontinu- objective data
Experimental (Tx) procedures OR
post-test treatment subjective ous with no
are operationally defined at a Maintenance data
only or better conditions calibration {b} instrument with
Protocol: rudimentary level or better collected
research data weak psychometric
Number of non-stan-
design IOA and procedural fidelity support OR
participants: dardized or Type of condi-
data are unreported
OR > one standardized tions in which Generalization data
data were collected across
retrospective Data loss: sig- Psychometric
collected: not at least one of the
comparison of nificant data properties
necessarily following: setting,
one or more loss possible weak
reported stimuli, persons
matched
Evaluators:
groups Operational
Neither blind
definitions are
Data loss: nor indepen-
extensive or
significant dent required
rudimentary
data loss
possible

SMRS} Rating 0
Does not meet Does not meet Does not meet Does not meet Does not meet criterion for a Does not meet Does not meet
criterion for a criterion for a criterion for a criterion for a score of 1 criterion for a score criterion for a score
score of 1 score of 1 score of 1 score of 1 of 1 of 1

a
  For all designs except alternating treatments design (ATD). For an ATD, the following rules apply:
{5} Comparison of baseline and experimental condition; > five data points per experimental condition, follow-up data collected, carryover effects
minimized through counterbalancing of key variables (e.g., time of day), and condition discriminability; n > three; no data loss
{4} Comparison of baseline and experimental condition; > five data points per experimental condition; carryover effects minimized through counter-
balancing of key variables (e.g., time of day), OR condition discriminability; n > three; some data loss possible
{3} > five data points per condition, carryover effects minimized counterbalancing of key variables OR condition discriminability; n > two; some data
loss possible
{2} > five data points per condition; n > two; significant data loss possible
{1} > five data points per condition; n > one; significant data loss possible
{0} Does not meet criterion for a score 1
43  }  Appendices

Appendix 3} Treatment Effects

Beneficial Treatment Unknown Treatment Adverse Treatment


Ineffective Effects Reported
Effects Reported Effects Reported Effects Reported

Single: For all research designs: Single: Single:


A functional relation is estab- The nature of the data does not A functional relation was not estab- A functional relation is estab-
lished and is replicated at least allow for firm conclusions about lished and lished and is replicated at least
two times whether the treatment effects two times
{a} results were not replicated but at
are beneficial, ineffective, or
least two replications were attempted The treatment resulted in
adverse
greater deficit or harm on the
{b} a minimum of five data points were
dependent variable based
collected in baseline and treatment
on a comparison to baseline
conditions
conditions
{c} a minimum of two participants
were included
{d} a fair or good point of comparison
(e.g., steady state) existed

ATD: ATD: ATD:


Moderate or strong separation No separation was reported and Moderate or strong separation
between at least two data baseline data show a stable pattern of between at least two data
series for most participants responding during baseline and treat- series for most participants
ment conditions for most participants
Carryover effects were Carryover effects were
minimized minimized
A minimum of five data points A minimum of five data points
per condition per condition
Treatment conditions showed
the treatment produced greater
deficit or harm for most or all
participants when compared to
baseline

Group: Group: Group:


Statistically significant effects No statistically significant effects were Statistically significant finding
reported in favor of the reported with sufficient evidence an reported indicating a treatment
treatment effect would likely have been found* resulted in greater deficit or
harm on any of the dependent
*The criterion includes: {a} there was variables
sufficient power to detect a small
effect {b} the type I error rate was
liberal, {c} no efforts were made to
control for experiment-wise Type I
error rate, and {d} participants were
engaged in treatment
Findings and Conclusions: National Standards Project  (  44

Appendix 4} Treatment Target Definitions

Skills Targeted for Increase

Academic Personal Responsibility


Tasks required for success with school activities Tasks that involve activities embedded into every-
day routines
Communication
Tasks that involve nonverbal or verbal methods of Placement1
sharing experiences, emotions, information Identification of a placement into a particular
setting
Higher Cognitive Functions
Tasks that require complex problem-solving skills Play
outside the social domain Tasks that involve non-academic and non-work
related activities that do not involve self-stimu-
Interpersonal
latory behavior or require interaction with other
Tasks that require social interaction with one or
people
more individuals
Self-Regulation
Learning Readiness
Tasks that involve the management of one’s own
Tasks that serve as the foundation for successful
behaviors in order to meet a goal
mastery of complex skills in other domains
Motor Skills
Tasks that require coordination of muscle systems
to produce a specific goal involving either fine
motor or gross motor skills

Skills Targeted for Decrease


General Symptoms
General Symptoms includes a combination of symptoms that may be directly associated with ASD or may be a
result of psychoeducational needs that are sometimes associated with ASD
Problem Behaviors
Behaviors that can be harmful to the individual or others, result in damage to objects, or interfere with the
expected routines in the community
Restricted, Repetitive, Nonfunctional patterns of behavior, interests, or activity (RRN)
Limited, frequently repeated, maladaptive patterns of motor activity, speech, and thoughts
Sensory or Emotional Regulation (SER)
Sensory and emotional regulation refers to the extent to which an individual can flexibly modify his or her level
of arousal or response to function effectively in the environment

1
  Although placement is not a “skill,” it represents an important accomplishment toward which intervention programs strive.
45  }  Appendices

Appendix 5} Names and Definitions of Emerging and


Unestablished Treatments

Emerging Treatments

Augmentative and Alternative Exercise


Communication Device (AAC) These interventions involve an increase in
These interventions involved the use of high physical exertion as a means of reducing
or low technologically sophisticated devices problems behaviors or increasing appropriate
to facilitate communication. Examples behavior.
include but are not restricted to: pictures,
Exposure Package
photographs, symbols, communication books,
These interventions require that the individual
computers, or other electronic devices.
with ASD increasingly face anxiety-provoking
Cognitive Behavioral Intervention Package situations while preventing the use of mal-
These interventions focus on changing every- adaptive strategies used in the past under
day negative or unrealistic thought patterns these conditions.
and behaviors with the aim of positively influ-
Imitation-based Interaction
encing emotions and/or life functioning.
These interventions rely on adults imitating
Developmental Relationship-based Treatment the actions of a child.
These treatments involve a combination of
Initiation Training
procedures that are based on developmental
These interventions involve directly teaching
theory and emphasize the importance of build-
individuals with ASD to initiate interactions
ing social relationships. These treatments
with their peers.
may be delivered in a variety of settings (e.g.,
home, classroom, community). All of the stud- Language Training (Production)
ies falling into this category met the strict These interventions have as their primary
criteria of: {a} targeting the defining symp- goal to increase speech production. Examples
toms of ASD, {b} having treatment manuals, include but are not restricted to: echo relevant
{c} providing treatment with a high degree word training, oral communication training,
of intensity, and {d} measuring the overall oral verbal communication training, structured
effectiveness of the program (i.e., studies that discourse, simultaneous communication, and
measure subcomponents of the program are individualized language remediation.
listed elsewhere in this report). These treat-
ment programs may also be referred to as the
Denver Model, DIR (Developmental, Individual
Differences, Relationship-based)/Floortime,
Relationship Development Intervention, or
Responsive Teaching.
Findings and Conclusions: National Standards Project  (  46

Language Training (Production & Picture Exchange Communication System


Understanding) This treatment involves the application of a
These interventions have as their primary specific augmentative and alternative commu-
goals to increase both speech production nication system based on behavioral principles
and understanding of communicative acts. that are designed to teach functional commu-
Examples include but are not restricted to: nication to children with limited verbal and/or
total communication training, position object communication skills.
training, position self-training, and language
Reductive Package
programming strategies.
These interventions rely on strategies
Massage/Touch Therapy designed to reduce problem behaviors in the
These interventions involve the provision of absence of increasing alternative appropri-
deep tissue stimulation. ate behaviors. Examples include but are not
restricted to water mist, behavior chain inter-
Multi-component Package
ruption (without attempting to increase an
These interventions involve a combination of
appropriate behavior), protective equipment,
multiple treatment procedures that are derived
and ammonia.
from different fields of interest or different
theoretical orientations. These treatments do Scripting
not better fit one of the other treatment “pack- These interventions involve developing a
ages” in this list nor are they associated with verbal and/or written script about a specific
specific treatment programs. skill or situation which serves as a model for
the child with ASD. Scripts are usually prac-
Music Therapy
ticed repeatedly before the skill is used in the
These interventions seek to teach individual
actual situation.
skills or goals through music. A targeted skill
(e.g., counting, learning colors, taking turns, Sign Instruction
etc.) is first presented through song or rhyth- These interventions involve the direct teaching
mic cuing and music is eventually faded. of sign language as a means of communicat-
ing with other individuals in the environment.
Peer-mediated Instructional Arrangement
These interventions involve targeting aca-
demic skills by involving same-aged peers in
the learning process. This approach is also
described as peer tutoring.
47  }  Appendices

Social Communication Intervention Technology-based Treatment


These psychosocial interventions involve These interventions require the presentation
targeting some combination of social com- of instructional materials using the medium of
munication impairments such as pragmatic computers or related technologies. Examples
communication skills, and the inability to include but are not restricted to Alpha Pro-
successfully read social situations. These gram, Delta Messages, the Emotion Trainer
treatments may also be referred to as social Computer Program, pager, robot, or a PDA
pragmatic interventions. (Personal Digital Assistant). The theories
behind Technology-based Treatments may vary
Social Skills Package
but they are unique in their use of technology.
These interventions seek to build social inter-
action skills in children with ASD by targeting Theory of Mind Training
basic responses (e.g., eye contact, name These interventions are designed to teach
response) to complex social skills (e.g., how to individuals with ASD to recognize and iden-
initiate or maintain a conversation). tify mental states (i.e., a person’s thoughts,
beliefs, intentions, desires and emotions) in
Structured Teaching
oneself or in others and to be able to take the
Based on neuropsychological characteristics
perspective of another person in order to pre-
of individuals with autism, this intervention
dict their actions.
involves a combination of procedures that rely
heavily on the physical organization of a set-
ting, predictable schedules, and individualized
use of teaching methods. These procedures
assume that modifications in the environment,
materials, and presentation of information
can make thinking, learning, and understand-
ing easier for people with ASD if they are
adapted to individual learning styles of autism
and individual learning characteristics. All
of the studies falling into this category met
the strict criteria of: (a) targeting the defining
symptoms of ASD; (b) having treatment manu-
als; (c) providing treatment with a high degree
of intensity; and (d) measuring the overall
effectiveness of the program (i.e., studies that
measure subcomponents of the program are
listed elsewhere in this report). These treat-
ment programs may also be referred to as
TEACCH (Treatment and Education of Autistic
and related Communication-Handicapped
Children).
Findings and Conclusions: National Standards Project  (  48

Unestablished Treatments
Academic Interventions
These interventions involve the use of traditional teaching methods to improve academic performance.
Examples include but are not restricted to: “personal instruction”; paired associate; picture-to-text
matching; The Expression Connection; answering pre-reading questions; completing cloze sentences;
resolving anaphora; sentence combining; “special education”; speech output and orthographic feed-
back; and handwriting training.
Auditory Integration Training
This intervention involves the presentation of modulated sounds through headphones in an attempt to
retrain an individual’s auditory system with the goal of improving distortions in hearing or sensitivities
to sound.
Facilitated Communication
This intervention involves having a facilitator support the hand or arm of an individual with limited
communication skills, helping the individual express words, sentences, or complete thoughts by using a
keyboard of words or pictures or typing device.
Gluten- and Casein-Free Diet
These interventions involve elimination of an individual’s intake of naturally occurring proteins gluten
and casein.
Sensory Integrative Package
These treatments involve establishing an environment that stimulates or challenges the individual to
effectively use all of their senses as a means of addressing overstimulation or understimulation from
the environment.
49  }  References

References}

American Psychological Association (1994). Dawson, G. (2008). Early behavioral interven-


Resolution on facilitated communication by tion, brain plasticity, and the prevention of
the American Psychological Association. autism spectrum disorders. Development
Adopted in Council, August 14, 1994, Los and Psychopathology, 20, 775-803.
Angeles, Ca. Available at http://web.syr.
edu/~thefci/apafc.htm (assessed March 4, Heiger, M. L., England, L. J., Molloy, C. A., Yu,
2009). K. F., Manning-Courtney, P., & Mills, J. L.
(2008). Reduced bone cortical thickness in
American Psychological Association (2003). boys with autism or autism spectrum disor-
Report of the Task Force on Evidence- ders. Journal of Autism and Developmental
Based Interventions in School Psychology. Disorders, 38, 848-856.
Available at http://www.sp-ebi.org/
documents/_workingfiles/EBImanual1.pdf Horner, R., Carr, E., Halle, J., McGee, G., Odom,
(assessed March 4, 2009). S., & Wolery, M. (2005). The use of single-
subject research to identify evidence-based
American Psychological Association (2005). practice in special education. Exceptional
Report of the 2005 Presidential Task Force Children, 71(2), 165-179.
on Evidence-Based Practice. Available at
http://www.apa.org/practice/ebpreport.pdf Johnston, J. M. & Pennypacker, H. S. (1993).
(accessed March 4, 2009). Strategies and tactics of behavioral
research (2nd ed.). New Jersey: Lawrence
Arnold, G. L., Hyman, S. L., Mooney, R. A., & Kirby, Erlbaum Associates.
R. S. (2003). Plasma amino acids profiles in
children with autism: Potential risk of nutri- Kazdin, A. E. (1982). Single-case research designs:
tional deficiencies. Journal of Autism and Methods for clinical and applied settings.
Developmental Disabilities, 33, 449-454. New York: Oxford University Press.

Chambless, D.L., Baker, M.J., Baucom, D.H., Kazdin, A. E. (1998). Methodological issues and
Beutler, L., Calhoun, K.S., Crits-Christoph, strategies in clinical research (2nd ed.).
P. et al. (1998). Update on empirically Washington, DC: American Psychological
validated therapies: II. The Clinical Association.
Psychologist, 51(1), 3-16.
Findings and Conclusions: National Standards Project  (  50

Klin, A., Lin, D. J., Gorrindo, P., Ramsay, G., & Sidman, M. (1960). Tactics of scientific research:
Jones, W. (2009). Two-year-olds with Evaluating experimental data in psychology.
autism orient to non-social contingencies New York: Basic Books, Inc.
rather than biological motion. Nature, 1-7.
doi:10.1038/nature07868. Task Force on Promotion and Dissemination of
Psychological Procedures (1995). Training in
National Research Council (2001). Educating and dissemination of empirically-validated
children with autism. Committee on psychological treatments: Report and rec-
Educational Interventions for Children With ommendations. The Clinical Psychologist,
Autism, Division of Behavioral and Social 48, 3-23.
Sciences and Education. Washington, DC:
National Academy Press. West, S., King, V., Carey, T.S., Lohr, K.N., McKoy,
N. et al. (2002). Systems to rate the
New York State Department of Health Early strength of scientific evidence. Evidence
Intervention Program (1999). Clinical Report/Technology Assessment No. 47.
practice guideline: Report of the recommen- (Prepared by the Research Triangle Institute-
dations. Autism/Pervasive developmental University of North Carolina Evidence-Based
disorders, assessment and intervention for Practice Center under Contract No. 290-
young children (age 0-3 years). Albany, NY: 97-0011. AHRQ Publication No. 02-E016.)
New York State Department of Health Early Rockville, Md: Agency for Healthcare
Intervention Program. Research and Quality.

Richard, V. & Goupil, G. (2005). Application des


groupes de jeux integres aupres d’eleves
ayant un trouble envahissant du develop-
ment (Implementation of Integrated Play
Groups™ with PDD Students). Revue quebe-
coise de psychologie, 26(3), 79-103.
51  }  Index

Index} Treatment Names

A
C
Academic Interventions  22, 48
Chaining  12 E
Adult Presence (environmental
modifications of)  12 Choice  12, 14 Early Intensive Behavioral Intervention  13

Alpha Program  47 Circle of Friends  14 Echolalia (incorporating into tasks)  12

Ammonia  46 Cognitive Behavioral Intervention Echo Relevant Word Training  45


Package  20, 45
Answering Pre-reading Questions  48 Embedded Teaching  14
Completing Cloze Sentences  48
Antecedent Package  11, 12, 17, 18, 19 Emotion Trainer Computer Program  47
Comprehensive Behavioral Treatment for
Applied Behavior Analysis (ABA)  12, 13 Environmental Enrichment  12
Young Children  11, 13, 17, 18, 19

Auditory Integration Training  22, 48 Errorless Compliance  12


Contingency Contracting  12

Augmentative and Alternative Errorless Learning  12


Contingency Mapping  12
Communication Device  20, 45
Exercise  12, 20, 45
Contriving Motivational Operations  12
Exposure Package  20, 45
B Cueing  12
Expression Connection  48
Behavioral Inclusive Program  13
D
Behavioral Momentum  12
F
Delayed Contingencies  12
Behavioral Package  11, 12, 17, 18, 19
Facilitated Communication  22, 48
Delta Messages  47
Behavioral Sleep Package  12
Familiarity with Stimuli (environmental
Developmental, Individual Differences,
Behavioral Toilet Training/Dry Bed modifications of)  12
Relationship-based  45
Training  12
Floortime  45
Developmental Relationship-based
Behavior Chain Interruption  12, 46 Treatment  20, 45 Focused Stimulation  14
Buddy Skills Package  14 Differential Reinforcement Strategies  12 Functional Communication Training  12

Discrete Trial Teaching  12 G

Dry Bed Training  12 Generalization Training  12

Gluten- and Casein-Free  23, 48


Findings and Conclusions: National Standards Project  (  52

H
Habit Reversal  12 M
P
Handwriting Training  48 Maintenance Interspersal  12
Pager  47
Mand Training  12

I Paired Associate  48
Massage/Touch Therapy  20, 46

Imitation-based Interaction  20, 45 PDA (Personal Digital Assistant)  47


Milieu Teaching  14

Incidental Teaching  13, 14 Peer Initiation Training  14


Modeling  11, 13, 18, 19

Individualized Language Remediation  45 Peer-mediated Instructional


Multi-component Package  20, 46
Arrangement  21, 46
Initiation Training  14, 20, 45 Music Therapy  21, 46
Peer-mediated Social Interactions  14
Integrated Play Groups™  14, 30, 50
Peer Networks  14
Intertrial Interval  12 N
Peer Training Package  11, 14, 18, 19
Naturalistic Teaching Strategies  11, 14,
18, 19 Peer Tutoring  46
J
Natural Language Paradigm  14 Personal Instruction  48
Joint Attention Intervention  11, 13, 18, 19
Noncontingent Access  12 Picture Exchange Communication
System  21, 46
L Noncontingent Escape with Instructional
Fading  12 Picture-to-Text Matching  48
Language Programming Strategies  46
Noncontingent Reinforcement  12 Pivotal Response Treatment  11, 14, 19
Language Training (Production)  20, 45
Position Object Training  46
Language Training (Production &
O Position Self-training  46
Understanding)  20, 46
Oral Communication Training  45
Live Modeling  13 Priming  12
Oral Verbal Communication Training  45
Progressive Relaxation  12

Prompting/Prompt Fading Procedures  12

Protective Equipment  46
53  }  Index

R
T
Reductive Package  21, 46
Task Analysis  12
Reinforcement  12, 13, 14, 15
Task Demands (environmental modifications
Relationship Development Intervention  45
of)  12
Resolving Anaphora  48
TEACCH (Treatment and Education of
Responsive Education and Prelinguistic Autistic and related Communication-
Milieu Teaching  14 handicapped CHildren)  47

Responsive Teaching  45 Technology-based Treatment  21, 47

Ritualistic/Obsessional Activities  12 Thematic Activities  12

Theory of Mind Training  21, 47

S Time Delay  12

Scheduled Awakenings  12 Special Interests (incorporating into Token Economy  12


tasks)  12
Schedules  11, 12, 14, 19, 47 Total Communication Training  46
Speech Output and Orthographic
Scripting  21, 46
Feedback  48
Seating (environmental modifications V
Stimulus-Stimulus Pairing with
of)  12
Reinforcement  12 Video Modeling  13
Self-management  11, 14, 15, 19
Stimulus Variation  12 Visual Prompts  15
Sensory Integrative Package  23, 47, 48
Story-based Intervention Package  11, 15,
16, 18, 19
Sentence Combining  48 W
Shaping  12 Structured Discourse  45
Water Mist  46

Sign Instruction  21, 46 Structured Teaching  21, 47

Simultaneous Communication  45 Successive Approximation  12

Social Comments (environmental


modifications of)  12

Social Communication Intervention  21, 47

Social Skills Package  21, 47

Social Stories™  15

Special Education  48, 49


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